Epilepsy health services in England are not good enough and vary in many areas, according to a report published today by national charity Epilepsy Action. This is despite the fact that almost half a million people in England currently live with the condition.
Epilepsy Action’s report, A Critical Time for Epilepsy in England, draws on information collected from acute trusts, healthcare commissioners, local authorities and almost 1,000 people with epilepsy. It is the biggest published epilepsy report to date. It reveals that despite NICE guidelines being in place to ensure people with epilepsy get good care, these standards are not consistently being met. The report reveals that in some areas:
• People with epilepsy are not getting access to specialist nurses – almost half of acute trusts (46 per cent) do not offer their adult patients access to an epilepsy specialist nurse.
• People with epilepsy are waiting too long to see a specialist - 80 per cent of acute trusts have waiting times longer than the NICE recommended guideline of two weeks for adults with suspected epilepsy.
• People with difficult to control epilepsy are not being referred for other treatments – 73 per cent of people who are still having seizures have never been referred to a specialist centre to investigate other treatments such as surgery.
Without the appropriate care, people with epilepsy are more likely to experience unnecessary seizures and be put at increased risk of epilepsy-related death. A lack of services also means that misdiagnosis rates are unlikely to improve.
The report also found that it is unlikely that services for people with epilepsy will improve when NHS changes take effect in April. It revealed that two thirds (66 per cent) of organisations responsible for commissioning health services have not, or have no intention of, assessing the needs of needs of people with epilepsy.
In response to the report Epilepsy Action has made 10 recommendations to improve the services available to people with epilepsy. Among these is a call for the government’s Health Select Committee to conduct its first ever inquiry into the availability and quality of the healthcare services available to people with epilepsy.
Simon Wigglesworth, deputy chief executive at Epilepsy Action, said: “The report shows that epilepsy services are unequal and in some places are nowhere near the standards set out in NICE clinical guidelines. We know that good epilepsy services do exist, but it’s clear from our report that there is a vast variation in services across the country. This isn’t good enough and means that the 495,000 people with epilepsy in England are not receiving a consistently good standard of care.
“Our concern is that without change these variations are set to continue. By highlighting where services are not up to standard, and where there are no future plans to tackle epilepsy, we can encourage trusts and healthcare commissioners to improve epilepsy services. Trusts and commissioners can use the findings of our report to identify where improvements can be made now and in the future to improve services for people with epilepsy.”
The report is accompanied by online maps which highlight local data from the surveys conducted. This means that for the first time people with epilepsy will be able to see what local services are available and whether future plans for epilepsy are in place. The maps can be viewed at www.epilepsy.org.uk/acriticaltime
Epilepsy is a serious neurological condition that anyone can get, at any time in their life.
Every day, 87 people are newly diagnosed and today in the UK, over 600,000 people have epilepsy. One in 10 of them is a child. For more information, visit www.epilepsy.org.uk